Tuesday, November 24, 2009

A step towards womanhood - not mine!

Good morning! This morning you find me, once again, reporting from Huntsville, AL. I am sitting outside this morning. It would not be nearly so bad if it were not somewhere in the 40s but that is the price I am willing to pay for Internet access. You see, wireless Internet access is only available on the back porch. Don't ask. Just think of it like an outhouse for the new age and remember that I am in the ol' south and things are just a bit different here.

But, enough about Internet access. I actually have a pretty momentous occasion to report. This is somewhat of a serious subject so you may want to forget everything I have said above.

You see, one of the long term side effects that Sydney has experienced from all of her treatments has been hair growth. While her hair has come back it is extremely thin and somewhat sparse. With an inability to grow long hair this has been a subject of sadness for her. She struggles with feeling, well, "girly." She constantly complains of looking like a boy. While I think nothing could be further from the truth, it is ultimately meaningless how I feel. It is her perception that counts. I can tell her that she looks pretty 1 million times but if she does not believe it, it is wasted breath.

Lynley and I have debated what to do. We have discussed many things. Ultimately, it has finally come down to something as simple as earrings. The decision was not difficult for Lynley or I. Frankly, we could care less. If it makes her feel more feminine than we are for it. Especially considering her history. For others, it has been more stumbling point. In fact, for some it has been a source of much difficulty. Apparently there is a rule about how old you must be for it to be considered "acceptable" to have earrings. Apparently, if you get them too young, it is considered tacky. I wonder, in this case. Are they more worried about how Sydney feels or how they will?

Get over it.

This is a very easy way for Sydney to feel more feminine and she certainly deserves it.

And so, without further ado, I present a beautiful little lady..........



Purpose is about what you believe, not what others may think about what you believe.

Monday, November 23, 2009

Sweet Home Alabama

Good morning, well the Dungan 7 - Hold on, I said Dungan 7. Not 5. Was that a typo? Good lord, I wish. But no, after much cajoling (actually female dictatorship) Lynley convinced everyone to bring along the dogs on our trip to Alabama. Thankfully it was not all of them - just 2 - but, that really was enough, wasn't it? Ironically, the dogs were the best behaved. They were our absolute best travelers. They were followed by the kids and then, well, Lynley. I would love to tell you some great Griswold Dungan stories about our trip across the country (well, half of it) in the suburban assault vehicle but there is really very little to tell. For the first time in the history of Dungan travel there was no high pressure or stress getting here. For the most part, everyone had a pretty good time. All of the kiddos were well-behaved and even Lynley seemed to sneak by without any of her usual travel demerits. In fact, she only scored on the bottom of the Dungan travel ratings because she is under the weather and she was a little whiney about her sore throat. She claims it is not the flu but time will tell. She seems pretty perky this morning so she may already be on the mend. If not, I am sorry Alabama. The upcoming statewide H1N1 pandemic is probably my wife's fault.

On Saturday, the day before our trip, Sydney and Graham had a Tae Kwon Do tournament, the DFW International. Of all places, the tournament took place at a church. Yes, we are in the bible belt aren't we? It all began to make more sense as we drove up though. This was a Korean church - complete with a sizable gymnasium. The big bouts were between Team USA and Team Mexico but the most entertaining portion of the opening ceremony was a sword demonstration by a team traveling from Korea. I hope to post some video once I get back to Texas and the video camera.

The kiddos did the best I have ever seen them do as team Dungan. For the first time there were no bronze medals - just silver and gold. Graham received gold in forms and Sydney received silver. However, Sydney came in second to another team member from GSX. Quite frankly, he was incredible. I love my daughter but she was no where close to Jacob in her performance. He did an great job. However, Sydney was clearly better than the rest of the competition and did well earning her medal. Sydney and Graham both won silver in sparring. Although they both lost to kiddos that were at least a belt level above them they both preformed better than I have ever seen them. Their technique is improving and I was terribly proud to be their father. They get better and better every time. Their confidence is improving. The both lack a bit of aggressiveness which seems to be the difference between matches that the lose by a single point and total domination. They are getting close. Technique is good but they just aren't throwing enough offensive kicks.

Well, enough bragging. The girls are all up and it is time to entertain the Dungan chickees.

Good news, Alabama , with more time this morning for review Lynley appears to be greatly improved.

Off to a week of fun purpose.

Thursday, November 19, 2009

A Pre Vacation Vacation

Okay, so this is how the rest of the week will pan out for the Dungans. Today is a regular school day. That means the twerplets head off to school. Interestingly, this is also an out of uniform day for them. The reason for that is because this is the day of Southwest Christian School's Thanksgiving Feast. You may be wondering why they are having the celebration today and not tomorrow? Well, you see, tomorrow they do not have school.

Now, this may not bug you but it does me. Why don't we finish out the week? It makes sense for parents that have to work. It makes sense for the kiddos that have to learn. Why aren't they having school? I mean, isn't it enough that they will be missing all of next week? For some reason, and I am still completely baffled by it, SCS deems it necessary to have a holiday before the holiday and, generally, a holiday after the holiday. It is as if they don't want to shock the kiddos too much. Let's see, they will be out all next week. So, let's give them Friday off so they can get used to not being in school all next week. That way the huge vacation won't be such a shock to their system.

In most cases, we also see this on their return to school. The day they return from a long holiday is generally a half day - sometimes 2 in a row. In this case, they are wanting to ease them back into school. These leaves parents with a couple extra days of scrambling to care for the little out of school heathens. Of course, I say that with deep rooted love.

Wow, I guess I really have some pent up child care issues. Well, none the less, school today and none tomorrow. On Saturday we have the DFW International Tae Kwon Do Tournament in Dallas. (I will be more careful when eating a hamburger after this tournament) On Sunday, we will be happily placing our tushies in the car for a 12 hour drive to Huntsville, AL for a week long visit with Mama Marge - a treat like no other.

Hmmm. Now I am beginning to understand why the kiddos may need a vacation before and after their vacation.

It will, none the less, be purposeful fun.

Wednesday, November 18, 2009

The Difference in Medical Care

Sometimes my kiddo's reactions surprise me. Hold on, let me back up. Let me start before that. A few days ago I mentioned that we didn't have to worry about the scar on my thumb because I was not burdened with having to be the good looking one in Lynley and I's little couplet. I get that. But does that mean I am a second class citizen?

Lynley had no less that two incredibly gifted surgeons work on her forehead. These were no schleps. We are talking top of their class Harvard Medical School graduates here. She got to go to two of the fanciest doctor's offices I have ever seen. There were 42" LCD televisions everywhere and the waiting room furniture was plush. She was even offered an Evian while she waited. The procedure was much the same and the follow up was even better. They carefully removed her stitches in only the most sterile of conditions and then carefully counseled her on the proper use of Maderma to reduce scarring. She experienced the pinnacle of medical care and I would say that my blushing bride deserved no less.

My experience, however, was a little different. First, I was told to sit in the back seat of my dirty suburban with my thumb in a bloodied used Chili's napkin while we drove an hour to the hospital that was most convenient to home. The surgeon operating on my thumb was not chosen by skill but rather by which ER would be less busy. I am quite sure this correlates with being the ER with the highest standard of care, right? After some cleaning and discussion with a nurse practitioner and a few student doctors they stitched me up while my wife and the gaggle of medical types made fun of my inability to cut a hamburger in half.

That was just the beginning.

I was ushered out of my fast food hospital experience with a warning to have my stitches removed in 8 to 10 days and a warning to call if my thumb turned black or started oozing green stuff. The problem for me became, who removes my stitches. I could go back to the ER but that seemed almost nonsensical. I could go to my PCP but he dumped me because I was too healthy and not profitable enough (yes, really!). Nope, neither of those worked. That left me with my family and this gets me back to where I began today's story.

Sometimes my kiddos surprise me. Without a good alternative to remove my stitches I figured I was left with my last option. Begging one of my kids to do it with the small clippers from the nail kit. Yes, a far cry from the luxury my parental counterpart experienced but, hey, I am willing to take one for the team. I first asked Sydney. She seemed the most trustworthy with scissors and the most sanitary but she declined me based on "grossness" as she put it. Who would have thought, after everything she has been through, this would be the tipping point for her. I won't go into everything gross I did for her but when she is old and grey and she reads this she will finally see the irony.

Regardless, I was left with Grubby and Grimey. Graham jumped at the chance. Due to his enthusiasm, I had to flash back quickly in my mind to see if I had punished him lately and whether I was due any malpractice. Of course, this was Graham so I felt pretty safe. Ainsley was in for it, too. Of course, I kept her a safe distance.

Graham was an excellent nurse. Together we removed the three stitches on the counter next to the kitchen sink. There were a few dirty dishes but not many. They were both very proud as was I.

My scar isn't very pretty but I guess that is the difference between Harvard trained medical professionals and Dungan trained 4 and 5 year olds.

I see where I rank.

But this is why my purpii are so important. Without them, what do I have?

Tuesday, November 17, 2009

Pictures - finally!

Good morning! I hope everybody had a great day. Mine was full of meetings - some of which were in Dallas. I mean no offense to Dallas-ites but life is too short to drive to Dallas. The good news, for me is that today I will be able to finally get back behind the keyboard to get some work done. Enough about me.

I know, I know. You want to hear about the Hot Harry Potter. You know, this really started as a joke. Lynley went in to her surgery calling the doctor Dr. Voldemort. (Yes, we are nerds.) I thought it was actually pretty clever and it was my stimulus for calling her the Hot Harry Potter.

Well, I'll be darned if it didn't come true.

I saw her for the first time late yesterday afternoon at Tae Kwon Do. There she appeared, back lit from the windows behind the door - the Hot Harry Potter. It turns out that her scar is a bit bigger than we both expected. It is obviously still very fresh. It is not zig zaggety like the original Harry Potter's scar but it is good enough for me. Over the next few months we should see the redness disappear and the scar fade into oblivion.

None the less, she will always be my Hot Harry Potter.

Great news! I finally have some of the pictures from our last Tae Kwon Do tournament. What do you think?


Graham winning his medal.


Sydney sparring in her first match.


Watch out! Graham is serious.



Winning gold! (Yes, they are older than she.)

Yep, it is there. 4 pictures of purpose.

Monday, November 16, 2009

Life, Liberty, and the pursuit of Answers

Good morning! First off, thanks for the email responding to Friday's neuroblastoma post on MIBG false positives. I had several people write and ask - "Well, what was found on Sydney's MIBG scan?" I probably should have reminded everyone that her positive result was for brown fat. She has an area around the nape of her neck which has always shown. It is not prominent. In fact, I would say that most would miss it, but, it is indeed there. So, to make a long story short. Sydney is fine. The finding for her is considered a false positive. I guess this is one of the reasons that I wrote about it. I knew it was an issue but was completely blown away that there was such a large percentage of children that also had this finding. Rarely am I surprised by something in neuroblastoma and the prevalence was a new one for me.

So, where are we?

Well, the Hot Harry Potter is recovering nicely. She goes back to the cosmetic surgeon today for a check up. She should get her first look at the scar this morning. If she was a good girl and followed the doctors instructions we can hope to see a healthy scar that will hopefully disappear in a few months.

My thumb? Ah, it is groovy. I will probably take the stitches out today. It isn't going to turn out nearly as pretty as Lynley's forehead but, not to worry, I am not the one that carries the burden of beauty anyway.

The kiddos? Hmph! I am in such a quandary with the kiddos. One minute they are perfectly stellar examples of human behaviour, the next, they need to be traded in on newer models. I am totally blown away by their propensity to change behavior on a dime. They are truly miniature versions of Dr. Heckyl and Ms. Behave. In this case, I would be misrepresenting Graham if I said he was truly apart of this dual personality syndrome. In this case, he is the good one. Of course, he is generally the brunt of the girl's behaviour so his split personality comes in the form of being happy one moment and crying the next because the girls have done yet another mean thing to him.

To be honest, I have had it with the abuse. Yesterday after Sydney sprayed Graham down with a hose for no good reason I told him to go throw her in the pool. I quickly realized this was not a very good idea and corrected it before he had the chance. Of course, he is too nice and probably would not have done it either way. The point is the pattern is recurring and if Sydney is not trying to make Graham cry it is Ainsley. He is grossly outnumbered and no amount of Lynley and I scolding and punishing the girls is doing the trick. He is going to have to solve this one on his own. He has got to fight back or they will never give him the respect that he deserves. Of course, he is too nice to fight back and too conscious of the rules to do anything bad to his sisters.

I want to help him but I haven't quite figured out the answer.

I need to think more about my purpose.

Friday, November 13, 2009

False Positive MIBG

During Sydney's last set of scans we had several little surprises. Thankfully most were unrelated to neuroblastoma. One of the scans however, MIBG, did show some uptake. Uptake on MIBG scans is always the scariest for kids with neuroblastoma because it has such a high specificity. In other words, it has a pretty good track record of only lighting up what it is supposed to. It is very specific to neuroblastoma. It should also be noted that MIGB is also used to detect other conditions such as pheochromocytoma. The bottom-line, however, is that MIGB is a pretty good tool at finding neuroblastoma and when in lights up on a scan it is a pretty good indication in a child with neuroblastoma that it is indeed neuroblastoma. I have always considered it one of our best weapons of detecting neuroblastoma. I have always considered it an accurate tool. Is it foolproof though?

MIBG dose show false positives. As of this date, a search of pubmed on "MIBG false positive" will bring up 111 articles. It is important to note that the bulk of the literature discussing false positive MIBG scans deals with soft tissue. In fact, until recently, I had never seen a published article which addressed false positives in bone. In soft tissue, there are a myriad of things that will uptake MIBG. Most of these are of sympathetic origin but there are several examples which are not.

One of the most common examples of soft tissue with MIBG uptake is brown fat or brown adipose tissue (BAT). BAT is one of two types of fat found in mammals. It is especially abundant in newborns and its primary function is to generate body heat. It is commonly found in the nape of the neck and is often a source of false positivity in MIBG scans. In fact, there are published reports showing as many as 12% of children with neuroblastoma showing accumulation in the nape of the neck - in none of these cases was the accumulation identified as a tumor by other imaging modalities or follow-up studies. Interestingly, it is also most commonly seen in winter.

There are several other soft tissue examples of false positivity as well. It is well known that MIBG can be taken up by tumors such as pheochromocytomas but it can also be seen in some carcinomas, adenomas, and angiomyolipomas. There are reports of uptake in an excessory spleen, benign liver tumors, and pyelonephritis. Uptake can also be seen when there is an obstruction in the urinary tract or kidneys. It has been seen in arteries and veins with stenosis and capillaries with angiomas. While that probably seems like a rare occurrence, you should note with all of the surgical intervention and chemotherapy seen in children with neuroblastoma it is more common than you may think. We have even seen uptake in the adrenal glands unrelated to neuroblastoma when the children have been treated with chronic adrenocorticotropic hormone. Finally, as you can tell if you have ever seen an MIBG scan, there are many examples of uptake throughout the chest an abdomen as the MIBG radiotracer makes its way through the blood stream and out of the body.

Seeing all of the potential for false positive may make one more wary about the specificity of MIBG. The good news is that most radiologists are trained to be able to tell what is real and what is not. However, it does illustrate the strong potential for false positivity in soft tissue.

Bones are a different story and there are far fewer examples of false positivity for neuroblastoma. Frankly, until recently, I had never even seen one in print. However, in this months Journal of Clinical Oncology (Vol27, 2009) there is a correspondence which seems to indicate some examples of false bony uptake - one on the ribs and another along the vertebra. The authors quote a small cohort but site several examples in the lungs, liver and original tumor bed in which MIBG showed uptake that later became non avid without further therapy indicating that perhaps these historical telltale signs of neuroblastoma relapse may in fact not be real.

So, as a parent of a child with neuroblastoma, what should all of these mean to you? Well, MIBG is still a pretty specific test to find neuroblastoma. However it is not bullet proof. It does fail. It is important to confirm findings with other scans and tests. At times, when you are suspecting a relapse due to a finding in MIBG this post may bring you some hope. More importantly, if you are one of the lucky few to have false positivity it may also prevent unnecessary treatment. Proceed with caution. Look at the entire picture.

That is what purpose is all about.